Matters of Engagement

How to compensate patient partners, and under what circumstances, has long been a topic of debate among patient partners, researchers, and engagement professionals. Join us as we speak with Zal Press and Dawn P. Richards, co-authors (with Isabel Jordan and Kimberly Strain) of "Patient partner compensation in research and health care: the patient perspective on why and how." They share their experiences and perspectives as long-time patient partners on both organizational committees and health research projects.

In this fascinating exploration with Zal and Dawn, we talk through some big ideas: patients conceptualized as part of the healthcare workforce; the historical roots of healthcare as a faith-based charitable enterprise; how patient partners are shouldering the burden for having awkward conversations about compensation; that compensation doesn't fix communication issues... and so much more!

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Mentioned in this episode:

• Patient partner compensation in research and health care: the patient perspective on why and how, Richards et al
• Medieval Healthcare and the Rise of Charitable Institutions: The History of the Municipal Hospital, by Tiffany A. Ziegler
• Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness, May et al
• Understanding the motivations of patients: A co‐designed project to understand the factors behind patient engagement, McCarron et al

Zal Press (Patient Commando) on Twitter
Dawn P. Richards on Twitter

Patient engagement is often loosely described as adhering to democratic principles even though, as we discussed in Dilemmas of Representation, there is rarely an election apparatus to support it. We thought it would be interesting to learn more about patient-led organizations that democratically elect who speaks and acts on their community’s behalf.  

The Empowerment Council is a mental health service user advocacy organization funded by the Centre for Addiction and Mental Health in Toronto. In this episode, we speak with Lucy Costa, Deputy Executive Director, to learn more about patient councils, to understand how democratic patient-led organizations decide what to advocate for, and to find out where advocacy and engagement intersect. 

This is a rich conversation that also explores the differences between advocacy and engagement. Lucy provides compelling testimony that there is pressure on patient councils to shift away from advocacy towards engagement, which, in her view, compromises their ability to push for system change. 

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Mentioned in this episode:

• Empowerment Council, a voice for the client of Centre for Addiction and Mental Health
• Peat, Marwick & Partners. (1982). Queen Street Mental Health Centre: An operational and organizational review.  (Not widely available but can be accessed through the Toronto Reference Library.)
• Legislative Assembly of Ontario, Hansard debate, March 29 1982. Extensive discussion of the findings in the Peat Marwick report.

Lucy Costa on Twitter

Calls for more diversity and better representation among engaged patients or patient partners seem to prompt changes to recruitment tactics and making engagement more accessible. What if there’s more to it than that? We talk to Paula Rowland about the paper she co-authored (with Arno Kumagai) called “Dilemmas of Representation“, which applies the concept of “recruitmentology” to engagement practice, explores types of representation, and explains why we may encounter trouble when there’s a mismatch of expectations.

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Mentioned in this episode:

• Dilemmas of representation: Patient engagement in health professions education
• more about recruitmentology: The Rise of Recruitmentology, by Steven Epstein

Paula Rowland on Twitter

Patient partners should be supported to elevate their skills and knowledge so they can contribute to healthcare improvement and system change, as experts in their own right. This is how Francine Buchanan sees the future of patient partnership. We speak with Francine about her views, and about the article she wrote on healthydebate.ca in response to Frank's.  

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Mentioned in this episode:

• How do patients attain equal status if they’re seen as ‘non-expert’? by Francine Buchanan
• The risks of equating ‘lived experience’ with patient expertise by Frank Gavin
• In Part 1, Frank mentions a cartoon/meme (which Emily refers to in this episode) that describes a particular physician-patient dynamic. We couldn't find it in cartoon form but the idea was popularized in this tweet: https://twitter.com/trishgreenhalgh/status/1000308119115915264

Francine Buchanan on Twitter
Frank Gavin on Twitter

Are patients ‘experts’? Does lived experience automatically mean one has expertise? What are we really saying, or accomplishing, when we call patients experts?  We think about these questions and talk to Frank Gavin about his article on healthydebate.ca. Frank isn’t sold on the ‘expert’ label as it applies to patient experience, and he explains why in our conversation.

[Download transcript]

Mentioned in this episode:

• The risks of equating ‘lived experience’ with patient expertise by Frank Gavin

• How do patients attain equal status if they’re seen as ‘non-expert’? by Francine Buchanan

• In Part 1, Frank mentions a cartoon/meme that describes a particular physician-patient dynamic. We couldn't find it in cartoon form but the idea was popularized in this tweet: https://twitter.com/trishgreenhalgh/status/1000308119115915264

Frank Gavin on Twitter
Francine Buchanan on Twitter

Welcome to Matters of Engagement - a podcast exploring the complex world of patient engagement and partnership. Full episodes will be released starting July 1 June 16 2020. In this short trailer, meet your hosts Jennifer and Emily.